Director-General Datuk Dr Noor Hisham Abdullah acknowledged that there was no official or specific registry now. “Currently,information is captured by the respective discipline’s database. For example, Marfan’s syndrome patients who have predominantly heart and eye problems are placed in the cardiac or eye registry,” he said.Dr Noor Hisham said it was difficult to estimate how many patients died from rare diseases because the official cause of death was usually a complication of the disease.
He said rare diseases were usually chronic, debilitating and often life-threatening.
The Health Ministry was looking into the development of a nationally coordinated plan to tackle rare diseases.
“This may outline a cohesive clinical, public, health and disability service approach to rare diseases, addressing prevention, timely diagnosis, early intervention, treatment and rehabilitation,” he said.
Dr Noor Hisham said there was also a strong need for a Rare Disease and Orphan Drug Act in Malaysia.
Such a law, he said, would cover the diagnosis, treatment and prevention of rare diseases, the acquisition and manufacturing of orphan drugs (a pharmaceutical agent developed specifically to treat a rare medical condition), R&D and subsidies for specific drugs and nutrients.
Countries such as Japan, South Korea, the United States and European nations cover rare diseases under national health insurance, allowing co-payment to be waived.
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According to the Global Genes Project, about 350 million people are affected by a rare disease.
It is believed that collectively the rare disease community is larger than the AIDS and cancer communities combined.
/theSTAR 12-12-2014
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